These are copies of the e-mail updates that I sent out during our five-week battle with TTTS, as well as those sent out to spread the word about how our girls have been doing. If you've missed an update, you can find it here.
Although I've basically been sticking to the "no news is good news" principle, lately, I thought I'd share some of the latest good news anyway.
Today is the first day there's really been anything new to tell. We had another sonogram today and the results were once again positive. The sonographer commented that she thought there was a little more fluid around the "stuck" baby. Everything else is pretty much the same. So what that means is that there's a net improvement.
It's been getting more and more difficult to differentiate between the babies, lately. For simplicity's sake, we've decided to go back to old nicknames that we'd been using before the TTTS was diagnosed...the stuck baby (on Helen's left) is "Bean" and the other baby (on her right) is "Sprout".
The doctors have been concerned about Bean lately, because she hasn't been recumulating fluid as fast as they'd like. They are afraid that there has been some damage to her kidneys, since the lack of fluid may mean that she's not producing as much fluid as she should. However, there is plenty of evidence (i.e. her bladder is always visible) that there isn't a problem with her kidneys, so the doctors are kind of stumped. The added fluid is good, but it's still not as much as they'd expect to see. It may be that some fluid is moving from one baby's sack to the other, but the doctors just don't know.
In general, though, the girls seem to be doing okay. Dr. Sandberg admitted today that he hadn't expected Helen to still be pregnant by this point. We've only got two more days before we reach 28 weeks! It seems more like 5 years than 5 weeks, but all four of us have made it this far. We're hoping for a few more weeks, but we're very grateful for the time we've had. The babies have come so far and their chances are so much better, now.
Overall, we're feeling like we've made it through the really scary part of all of this. We know that the babies will have to spend some time in the Intensive Care Nursery after they're born, but the girls are getting far enough along that they won't need quite as much help to survive. We got a tour of the nursery on Tuesday after Helen's massage. Both events helped Helen considerably. The massage had obvious benefits. The tour allowed us to dispell some of our fears about how the babies will do. I think both of us were very nervous about the idea of seeing the babies in the incubators with all the tubes connected to them and everything.
We saw several babies who were born earlier than our girls will be and they seemed to be doing quite well. It wasn't as bad as some of the pictures we'd seen on TV, so it definitely helped us to get an idea of how things will go.
Well, I'm starting to lose my train of thought here, so I'd better get going. I just wanted everyone to know that we're doing much better and that the girls seem to be getting better every day.
I hope you're all doing well, too. Keep up those prayers...but not just for us. There are lots of other people who can use them, too.
We love you all.
Yesterday was another long day after a slight dip in the road. Another sonogram yesterday confirmed that there was a slight build-up of fluid in Sprout's abdomen. I thought I had seen it on Thursday, but the sonographer said she didn't see it, so I convinced myself it wasn't there. Fortunately, the doctors saw it after the fact.
The doctors had told us that the excess fluid might build up again, so this wasn't entirely unexpected. The last amnio reduction was not likely to completely correct the imbalance of blood flow, but the hope was that it would slow it down for the rest of the pregnancy. Unfortunately, that didn't happen. It did, however, get us through almost two more weeks before the TTTS showed up, again.
Helen underwent another amnio reduction last night, and the hope is that it will buy us another week or more. The babies are definitely going to arrive early, but it is dangerous for a baby to be delivered with hydrops or any excess fluid in her body. We're hoping that the latest reduction will allow her to eliminate the small amount of fluid that has built up, so that she can have the best possible chances when they do arrive.
We're handling things okay. We knew this was a possibility and just dealt with it when it happened. The doctors changed Helen's pain medications and gave her something to calm her down, so the procedure was not as hard on her as the previous two. It still hurt and certainly wasn't easy, but it could have been worse.
The babies seem to be doing fine, today, so we're grateful to have made it through another difficult moment. We'll be having another sonogram today just to check in on the girls. We don't expect to see much change, but it'll be nice to know how they're doing.
Well, I guess that's about it for today. As always, I'll send more information when I get it. We hope you are doing well.
Once, again, I'm sorry it's been a whole three days since the last update. We've just been through another one of those parts in the rollercoaster that make most people lose their lunches.
As I mentioned in the last message, we had a third amnio reduction on Friday. The doctors didn't report the results of Saturday's sonogram until Sunday morning. They said that the results were encouraging, in that there was no change in the baby's ascites (the fluid in her tummy) but that there was an improvement in the profusion of blood to her brain. This was something new to us, since we didn't know that there had been a problem before. The doctors were encouraged, however, so we took the good news at face value.
Shortly after that we went down for another sonogram, which is when things got scary for awhile. I'll preface this by saying that Helen and I have been looking at these sonograms for five weeks. We've learned what to look for in certain instances and we've gotten pretty good at seeing the trends. As a result, we were devastated when we both saw the sonogram and were convinced that the ascites had gotten worse. The sonographer wasn't overly encouraging, because she hadn't had a chance to look at the previous day's pictures.
When we got back to the room, I started making phone calls telling our close relatives the bad news. I had just finished telling Helen's mother that things weren't going well when the doctor came in to talk to us. His take on things was quite different.
The doctor said that the ascites in Sprout's belly was unchanged, it had not gotten any worse. Not only that, but there was more fluid in Bean's sack. While we had hoped to see a decrease in the ascites, the net result was an improvement in both babies. Of course, I had to make a few phonecalls to take back our dire predictions.
Yesterday's sonogram results were reported to us last night. Sprout's ascites is holding steady. While we'd like it to decrease, it's too early to see that, really. However, the doctor made a distinction between ascites and hydrops. Apparently, fluid in the abdomen is not as dangerous as full-blown hydrops, which includes a profusion of fluid into the actual skin tissues. Neither baby has hydrops at this point. The fact that the ascites isn't getting any worse may be an indication that Sprout won't develop it. The doctor says that a baby can be born with fluid in the abdomen without any more danger than they face already. It's actual hydrops that we need to worry about.
And for another positive, the doctor also said that the fluid in both babies' sacks is within the normal range. Bean still doesn't have as much fluid as Sprout and technically she's still considered stuck, but she isn't quite as stuck as she was before.
So, in general, the babies are still improving, despite the fact that we still have little bumps in the road along the way. They are getting bigger, now, which makes it easier to monitor their heartrates. They are definitely giving their mommy strong kicks and shoves, too. Last night we had our first "alien-esque" experience, when Sprout decided she needed to stretch out for a bit. Helen's belly moved in several directions at once! It was so amazing to see.
Helen continues to do well, too. Her blood pressures are pretty much holding steady and all of her lab results are within normal ranges. As of this morning, they've started taking blood samples every day so they can catch any changes early. She's officially been pre-eclamptic for about three or four weeks, so I think the doctors are expecting her condition to change any time now. We're hoping things will continue to be stable for a while longer, but that's not really something we can control, so we're happy the doctors are taking a close look at her condition.
We'll be going down for another sonogram today. At this point, I'm not sure what differences they expect to see. Very little changes within a 24-hour span, but we always hope to see something good. I'm hoping that the ascites will be gone by the end of the week.
Of course, I'll have to go back to Monterey by Friday. The next quarter at school starts on Monday and I'll have to make arrangements for my new classes. I have been verbally granted a three-month extension at Monterey, so I'll be able to take things slower next quarter in order to take care of Helen and catch up on the work left from the classes I've been missing out on.
Well, I suppose that's it for now. Things are still going as well as can be expected, I guess. I spent six hours doing two loads of laundry in the hospital-provided machines last night. That was fun. I've never seen dryers that ran for two hours and still left the clothes damp. We'll hope for more good news as the days go on. We've made it to 28 weeks, 3 days as of today.
I hope you are all doing well. I met a grandmother last night while I was doing laundry. Her granddaughter is in the Children's Hospital here with a very rare condition (I think she said something like "meningial sclorosis") that is making her very sick. They've been in the hospital since January and the doctors seem to be stuck in a mode of reacting to the next infection. They are afraid she might have suffered a stroke which causes tremors in one arm, and they think that she will eventually need a kidney transplant. All of this is happening to this girl who celebrated her first birthday in the hospital. Hearing things like that make me realize how lucky we are. Despite the problems that are happening to us, our babies are showing no signs of any disorders or defects. They are sick, but it's not because of anything that's wrong with them. The problem is in the placenta. I pray for that little girl and her family. They have been through so much more than us. It gives me hope that we'll be able to weather this storm, too.
Take care of yourselves. I'll send more information when we have it.
There's been a major change in the flow of things, here. Today's sonogram showed that Bean has a tiny amount of fluid in the tissues of her scalp. They doctors are concerned that this may be a very mild, very early case of hydrops development. The fetal surgery team has decided that at this point, the babies are better off outside, where the TTTS is no longer an issue.
Thus, the plan is to deliver the babies by caesarian section tomorrow (27 March) at 10:00am. The doctors say that both babies have a very good chance for survival at this stage, even with the mild hydrops they may have developed. There are always problems that can arise with very premature babies, especially those suffering from TTTS, but the doctors do seem optimistic.
The evening seems to be crawling by, now. The babies' heart rates will be monitored throughout the night, because the doctors are a little concerned about some things they saw during the monitoring for this shift. So far we've had a couple of scares with racing hearts followed by really slow hearts. The babies seem to be doing fine, now, but we'll be watching them closely to make sure they don't get too anxious and show up even earlier than they are supposed to.
Despite all of our problems, Helen and I are thinking positively. We've seen the NICU and have a good feeling about the people working here. We've made it through these five weeks and attained the "magical date" of 28 weeks. We even got to 28 weeks, 4 days. We're happy that God has allowed the babies to make it to this point. I know that things are still entirely within His hands, but I just have a feeling that He will continue to protect our girls and help them get well.
I guess that's it for tonight. I'll be working up a site with a few pictures of our babies so that our friends and family will be able to see them as soon as possible. I will warn everyone that they will have to have tubes and other contractions connected to them. If the pictures might bother you, you'll be able to avoid them. I'm including some pictures of Helen and the hospital room, too, so there will be something for everyone. Having seen the babies in the NICU here, I know things aren't as bad as one might imagine.
Well, I'm going to quit babbling, now. I'll send out an update as soon as the babies are born (or as close to it as possible). Please keep up those prayers.
Well, the big day has finally arrived. Things didn't go quite the way we'd expected, though. We were awakened at 4am when the doctors came in to tell us that Sprout was experiencing some decelerations in her heart rate and that they were going to go ahead and deliver them because they were worried about her condition.
As such, Tatiana Leilani Crenshaw was born at 5:15am, followed by Natasha Kelani Crenshaw at 5:16am. Tatiana weight just about 1 pound, 14 ounces and her sister weighed about the same, maybe slightly more, but they were within half an ounce. They are both about 13 inches long. Both babies cried when they entered the world, which is a very good sign. Currently, Mommy is doing quite well, as she recovers from the surgery which went off without a hitch, so to speak.
The doctors say that the babies are "okay," in that they are stable and the doctors haven't seen any real complications that they didn't expect. Both babies have a little bit of lung disease, showing a little bit of fluid in the lungs due to their current state of development. They are needing help to breathe for now, but have received one and a half courses of steroids to help their lungs develop faster.
In general, the babies look okay. I've taken a couple of pictures, even though they have a few tubes connected to them. I'll upload those later. You can see some pictures of Helen and the hotel room, as well as some basic info on TTTS, plus copies of previous update messages. Check back later and there will be some baby pictures up there...hopefully tonight.
Well, I suppose I should get going. Helen's resting, now. I'm running on very little sleep and need to take a nap, myself. Thanks so much for everyone's prayers and support. We couldn't have come this far without you. We'll send out more baby info when we have it.
Wow. I can't believe I've written over 25 of these updates already. It's been such a wild ride and I know that "it ain't over, yet."
I was planning on waiting until the doctors came to talk to us today, but it looks like that won't happen until mid- to late-afternoon, so I thought I'd share the latest news with everyone.
Tatiana and Natasha are still doing pretty well. They are both very active little babies who like to kick and squirm whenever they can. However, they are getting to the point where so much room combines with all the activity in the nursery to agitate them quite a bit. Usually, they seem to do better when they are balled up and lying on their bellies.
Tatiana is still very scrawny and will probably be that way for some time. As of this morning, she still hadn't been placed into an isolette (an incubator, basically) because the nurses apparently want to monitor her for any additional trouble. However, she is oxygenating fine and the nurses continually adjust her respirator as her needs decrease or increase over time. As with both babies, the help she needs will change over time (getting better and worse and then better again), but in general, she's still doing better than she was right after she was born.
Natasha has been placed in an isolette already and seems to enjoy the relative quiet it provides. She still really likes to suck on the little pacifier the nurses gave her. Additionally, she tends to be extremely fiesty from time to time. The nurses had to move the little IV from her foot to her hand after she literally kicked it out yesterday morning. She's already figuring out how to tell people what she wants. ;)
Both babies are dealing with the things common to most premies. They both still have the little heart murmur that may indicate that the ductus connecting their heart and lungs has not yet closed. They are receiving medication that will hopefully cause the ductus to close, but the first two doses haven't had much of an effect. The doctor said that they may need two three-dose courses of medication before they see an effect. If they don't get any response by then, the girls might need a little surgical procedure to close it for them. This is something common and the doctors know how to deal with it.
The other problem is that the girls' skin is still very sensitive. They've had problems of getting little burns from the CO2 monitors attached to them, but the nurses realized the situation and now move the monitors to different areas every once in awhile.
For the most part, both girls are doing quite well. We are passing out of the "honeymoon" phase where they will begin to display more discomfort and exhibit more difficulties, but the nurses are very positive and have done a good job of warning us that there are always little roadbumps when it comes to premature babies.
Well, I suppose that's about it. Helen is doing much better. She's experiencing more discomfort as the pain medication they gave her after surgery has finally worn off, but she's up and about, able to spend some time on her feet. She's doing the things she needs to do as a new mommy and getting plenty of rest.
We have moved to the post-partum section of the hospital and are now in Room 1514. Assuming she continues to get better, they will discharge Helen on Sunday or Monday. After that, we'll hopefully go to a hospital-provided guesthouse or to the Ronald McDonald House, if they have a room available. The nurses say that we should expect Tatiana and Natasha to be in the hospital at least until their original due date, so we don't expect to have them home until after June 15th. Helen will obviously be in San Francisco 99.999999% of that time, I will be spending 3 or 4 days a week in Montery, depending on my school work load.
We're looking into trying out a cassette recording of my voice to play for the babies when I can't be with them. Helen's cousin worked in a NICU for many years and suggested that among a wealth of other great advice (Thanks, Cindy!). I thought it was a neat idea. The nurses say that it doesn't work with every baby, but we can give it a try. We certainly don't want to do something that will bother them.
I guess I'd better scram. Thanks so much for all the words of encouragement and congratulations. We're very pleased with our little girls, and I'm extremely proud of Helen. Ron, her father, has been a fantastic help, too.
Take care and God bless.
Good morning, All.
Well, the girls have made it to 29 weeks of "post-conceptual" age. That's a funny little term I learned from one of the books on premies that the hospital loaned to us. It helps keep things in perspective on their development. As many of you will know, a full term baby would be about 40 weeks post-conceptual age at birth.
The doctors came to speak with us yesterday afternoon and the news was generally good. The girls underwent ultrasounds on their heads and each one got a cardiology review. The head ultrasounds came back with great results. There are a few issues that the doctors are looking at with both girls' hearts, but the good news is that the endomethazone (sp?) treatment has worked. The ductus of each girl has closed, so that part of the worry is over. They each still have a little bit of a heart murmur, but the doctors are confident that they can deal with any problems that may be causing them--and that's assuming they even need to deal with them. Sometimes things like that fix themselves. Additionally, the doctors are watching the girls' lungs with are displaying problems common to very-very premature babies.
The girls had a really good night last night, too. They are still losing weight, as all babies and especially premies, do when they are first born. Tatiana now weighs 1 lb 6 3/4 ounces and Natasha weighs 1 lb 10 ounces. This weight loss is very normal, and I really couldn't see any difference in their sizes. To me, they look better every day...but then, I think I can see little halos over their heads, too. I'm the daddy, after all.
Both Tatiana's and Natasha's hemolitics are a getting low, so the nurses say that they will probably need to have blood transfusions within the next 24 hours. This is also a normal situation for premies, since they can't make blood as fast as full-term babies. Unfortunately, the requirement for blood samples draws usually is greater than they can keep up with. Granpa Fortner has already donated some blood for them, so we're ready for that eventuality.
Once Tatiana's hemolitics are back up, the nurse says they should be able to start feeding her mom's milk through a little tube, rather than providing nutrition through an IV. That's a pretty big milestone and we're very proud of her. ;) The nurses say that there may be problems with the first feeding and that she might have to go back on the IV, but it's still a step in the right direction.
Natasha's still on medication to regulate her blood pressure, so it will be few more days before she is able to get mile, but she's improving, too. Natasha was the recipient when she was born, so she still has some extra fluid to get rid of. As a result, they nurses are balancing her fluid levels carefully and will need to work with her a bit before she's ready for such a big step as feeding.
In general, they're both doing really well. That makes me feel better about getting back to Monterey to start a new quarter. I'll probably have to spend Monday thru Thursday in Monterey and will spend Friday, Saturday, and Sunday in San Francisco.
We were incredibly fortunate to have the help of the Center's social worker in getting a room at the Ronald McDonald House of San Francisco (I think it's actually "of the Golden Gate"). Grandpa stayed there last night. I'm so impressed with the facilities there. I really didn't know much about the Ronald McDonald Foundation until a few weeks ago. The work they do is fantastic...if you're looking for a charity to donate to, you might want to consider it.
Helen will be discharged tomorrow and will go directly to "Ronnie's." Once she's settled in, I'm sure she'll want to hear from you, but she'll need some time to get comfortable, so I'll let everyone know when she's ready. I appreciate everyone's patience and can assure you all that I'll be keeping you up to date as much as possible. I should also be adding a few more pictures to the website once I get home and have access to a higher-speed internet access.
Well, I'm going to get going and see our babies before we head out of town. I hope everyone has a wonderful Easter full of all God's promises for new life. I know that we've certainly seen the fulfillment of that promise in our two little beauties.
Take care and God bless.
I hope everyone has had a wonderful Easter!
I know I should be in bed. I have to actually go back to work tomorrow, but I thought I would send out one more update.
The girls (all three of them) are still doing well. Tatiana and Natasha have had their first transfusions and seem to be doing well. Tatiana had a little bit of a fever, so the doctors ran several tests to make sure everything was okay. They didn't find anything and her temperature came back down after a while, so there probably wasn't much to worry about. The nurses say that the babies' systems just aren't very good at regulating body temperature, yet.
There really isn't much new to report on the babies tonight. I'd be more than happy if the rest of these updates were boring little messages like, "They're still growing and doing fine" or "Well, we had another uneventful day." I'm pretty sure that things won't be quite that easy, but we'll take them as they come. I still have a good feeling that our girls are going to be just fine.
Helen is doing fine. She's settling into the Ronald McDonald House and continuing to heal from all she's been through. I have conveyed all of your well-wishes to her and will continue to do so. I'm sure that she'll feel up to getting in touch with people before long. She hasn't had much time to herself within the last several weeks, however, so I'm hoping she can relax a bit, for now.
As for me, it's time to get back to the books. I tried to get some studying done while I was with Helen at the hospital, but I just couldn't seem to get my mind on academics. Now that the babies are in a more stable environment, I really need to buckle down and get myself back on track. After all, those girls are going to need money for their education...not to mention for all the incidentals that a daddy is supposed to provide for his little girls. ;)
I did manage to get more pictures put up on the website today. You'll find two new pages containing photos from the first three days, as well as pictures of the girls at 29 Weeks Post-Conceptual age. My plan is to get pictures of them weekly to show their project. That was Grandpa Fortner's idea and I think it's a darn good one.
Well, I guess that's about it for the night. As always, I'll send out more information as I get it.
Again, I hope your Easter was peaceful and joyous. Take care of yourselves and each other.
Well, I'd say that today was a pretty good day. I managed to get myself back into the school thing without any real problems. I've got a busy quarter ahead of me, but I don't think I'm facing anything I can't handle. I've got three months to finish up the work from my previous classes, and I only have a couple of current classes to worry about, so things are looking pretty good on that end.
As for Helen and the girls, they seem to be doing pretty well, too. Helen got to help take care of the babies some, today. She helped the nurses change diapers, take temperatures, and also got to help give the girls their first feeding! I'm a little jealous, but I'm more happy for her than I am jealous. She sounded much happier when I talked to her tonight. I think that actually doing "mommy things" for the babies has really lifted her spirits.
In general, the littlest ones are doing well, too. Natasha had another blood transfusion, so I think that makes three for each of them. That's supposed to be normal for them, though, so we're not too worried. The nurses are still weighing them every day and it looks like Natasha might have stopped losing weight. I don't know what Tatiana's weight was because they had just fed her when I called. The nurse wanted to let her food settle before she disturbed her.
There really isn't much more to report today. The nurse has officially reported that they're both really cute, so that's settled. Beyond that, it's another day that we can be thankful for.
I hope you all had a day you could be thankful for, too. If not, I hope that tomorrow is better than today, but not as good as the day after tomorrow.
Good afternoon, Everyone!
It's been several days since I sent anything out. Sorry for the delay, but I've been in San Francisco with my girls all weekend. This is the first opportunity I've had to write another update for everyone. I've got some work to get done, so I'll keep this one short, today.
In general, both girls are still doing fine. Tatiana has gained a good deal of weight and now weighs 930 grams, which is almost three ounces more than her birth weight. Natasha is trying to catch up to her sister, but she still only weighs about 850 grams or so. She's almost back up to her original birth weight.
Both little angels are tolerating feedings very well. They're up to 11 milliliters of milk every three hours. I think the doctors plan to take them off of the intravenous supplemental nutrition today, since they're doing so well with their feedings. They can't actually coordinate swallowing yet, so they are getting all their feedings by mouth through a tube that goes directly into their stomachs. They usually don't even wake up for feedings. After all they've been through, I think they're entitled to be a little lazy for awhile.
Neither Tatiana nor Natasha has opened her eyes, yet. This is more of a curiosity for the doctors than a matter for concern. They think the girls will probably open their eyes sometime within the next couple of weeks and that everything will be just fine with their eyesight. There's no reason to think there is anything wrong with their eyes. We jokingly say that the girls are still in denial about having already been born. They'll open their eyes when they are good and ready.
In general, they're doing really well. The doctors say that they are probably the healthiest babies on our wing of the ICN. Of course, that doesn't mean they don't give us little scares every now and again. They like to wiggle around sometimes and they are very particular when it comes to being comfortable. They can easily get irritated with too much stimulation, handling, prodding, and poking. They hate having wet or messy diapers, too. In general, they tend to show their discomfort through lower blood oxygen levels (called "desat-ing"). If you leave them alone, they will usually normalize.
Well, I guess that's about it. I'm hoping I can continue to provide boring reports about how the girls are just growing and that we've had nothing exciting happen in the last week. Usually, excitement is a bad thing in these situations. ;) If they continue to do well, there are rumors that the girls may be able to leave the hospital in as few as six weeks. It seems like such a long time, but we were told that some babies leave as early as 35 weeks of post-conceptual age. Of course, I think babies need to weigh more than 5 pounds before they can go home, so we may have to wait a bit longer.
We'll keep you all informed. I've done some juggling of web-sites and have moved the update site to http://www.thecrenshawfamily.net/ All the old information is still there and I've added another picture gallery, plus the weekly progress picture. Feel free to check them out!
Well, I'm gonna scram. I've got to get some reading done. Take care all, and God bless!
I need to be studying and taking care of some things around the house, but I wanted to get the news out.
Tatiana opened her eyes, yesterday!
Sometime before 9am she opened one eye, but didn't open the other. By noon she had both eyes open. I didn't get to see them with their eyes open, obviously, and by the time Helen got to the hospital, the nurses had already put the antibacterial drops in her eyes, which causes her to keep them closed most of the time. Helen did get a little peek from her, though.
Natasha is still being stubborn. She's been lagging a few days behind her sister ever since she was born. We're confident that she'll open her eyes when she's good and ready.
Both girls are still tolerating their feeds. Tatiana is completely off of the IV supporting nutrition. She's up to 14 mL of milk, fortified with 27 extra calories-worth of formula. Natasha is still at 13 mL of straight milk, but she's tolerating her feeds just fine. Her system seems to be a bit mor delicate than her sister's.
Well, I guess that's about it for now. Helen continues to do well. She's still battling the problem of the incision that won't quite heal. The doctors think it should be completely closed within a couple of weeks. She's getting good care in keeping it clean and dressed properly. Fortunately, it doesn't cause her any real pain...just occasional discomfort, she says.
Hope you all are doing well. We'll be talking to you again, soon!
Not to be outdone by her sister for too long, Natasha has decided to open her eyes and see what's going on. Apparently, it happened sometime between 8am and 10am this morning.
The goal is to get Natasha on the supplemented milk after the next three feedings. Once we know Natasha is tolerating the change, neither one of them will need to be on the TPN (IV nutrition). (My thanks to everyone at the DoubleBlessings group who warned me about the possible problems associated with TPN. I was planning on asking the doctors about that on Friday, but hopefully it will be a moot point by then.)
Finally, some big news I neglected to mention in the last letter. Helen may actually get to hold Tatiana this evening! The nurses said yesterday that Tat was probably stable enough to cope with actual skin-to-skin contact. I'll let you all know how things turn out.
Hello, again, everyone!
Well, it's Monday and we've had an eventful week. The website has been updated with all the pictures, but I'll fill you in on the important details.
Helen continues to get stronger and it won't be long before she's completely recovered from the surgery. Her incision is healing nicely, even if it is a little slower than we'd like. She's still required to change the bandage everyday, but that's a minor issue.
The girls are progressing very well. They are both feeding without any problems. They're gaining weight, too. Tatiana now weighs 2 pounds, 1.5 ounces, and Natasha weighs 1 pound, 13.5 ounces. The increase in weight has been accompanied by an increase in size, too. Both girls are measuring in at 14 inches in length. Tat is still gaining size and weight faster than her sister, but there doesn't seem to be anything to worry about, because both babies are doing all the things they're supposed to be doing at this point.
The number one change was the opening of the eyes, which I mentioned in the last update. However, the coolest thing this week was that Helen and I actually got to hold the babies. As usual, Tatiana was first, because she has always been the most stable and tolerant of handling. But Natasha wasn't too far behind and really seemed to enjoy the experience. I know that Helen and I really enjoyed it, too. We both held them directly to our skin, since that is supposed to be very good for premature babies. It's amazing how tiny and light they really are. I definitely chalk that up as one of the best experiences of my life.
Natasha did scare us a bit by showing us that she can make her hand change colors. While Helen was holding her, Natasha's hand would occasionally go completely white. When we showed the nurse, we discovered that her hand was still warm, but the nurse was unable to find a pulse in that hand. We straightened our her hand and after a few moments, the blood would come rushing back into it. This happened only about three or four times a few days ago while Helen was holding her and hasn't happened since. The doctors and nurses say they've never heard of that happening before, but they also warned us that babies, and especially premature babies, tend to have very poor circulation. They will continue to monitor the situation, but don't think it's anything to be worried about.
In general, both girls are doing really well. Natasha's heart is basically back to normal, having recovered from the damage she suffered as the last recipient in the TTTS ordeal. Tatiana continues to display the heart murmur she had from birth, but the doctors feel that they won't need to do anything about it. Many people go through their whole lives with a heart murmur. The doctors say that Tat has a slight case of pulmonary stenosis, which means that the valve going from her heart to the pulmonary artery (to her lungs) doesn't open quite enough. However, the murmur is very loud, indicating that the valve is still opening fairly well (if it didn't then the murmer may be almost inaudible). Either way, they think she'll be fine.
Everything else is proceeding according to the textbook for very very premature babies. We're so blessed to have strong healthy girls who have apparently decided not to scare us anymore with their health problems--well, at least for a while. I'm sure they'll find all sorts of things to get into when they get older.
We've been told that they might try to extubate Tatiana within a week or so. She seems to be handling the breathing thing well and it may not be long before she's able to do it without help. We're anxious for both girls to be free of all their tubes and wires so they can sleep in the same bed. I think they miss each other. ;) Either way, they'll be together soon enough. We just want them to be healthy, and they seem to be doing just fine.
Well, I suppose I'd better go. I've done my duty for the website and updates. Now it's time to hit the books, again. I hope everyone has a nice week. I'll send more news when I get it!
Greetings, one and all!
I'm sorry for the delay in getting the weekly message out. Unfortunately, I have been busy doing school and yardwork and have been unable to get around to getting the website updated. I have taken some time this evening to do so, and you should find the latest pictures on the site already. I've only added eight of the 30-some pictures I took last weekend, because I just don't have that much bandwidth on the website. Sorry. I tried to include the best pictures. I have a feeling that I'll be adding another "catch all" page later on that doesn't fit any specific timeline, but includes some pictures I couldn't put on before. Additionally, I have a few printed pictures that I need to scan in and add to the collection.
Now for the latest news on the girls:
Natasha is doing just fine. She managed to get her weight up to just over 2 pounds within the last week. She's starting to stabilize a little bit, but she's definitely the more sensitive of the two. It seems that her oxygen levels drop if you just look at her isolette the wrong way...sometimes it drops if you don't look at her, so it's tough to say. ;)
Tatiana is doing very well, too. She's a bit fiestier than her sister, as evidenced by her latest penchant for removing her breathing tube on her own. She has done this three times in the last few days. The frequency has led some of us to believe that she's doing it on purpose. The nurses have had to resort to swaddling her tightly in her blankets or wrapping her up in a shirt (kind of like a straight jacket). She doesn't seem to mind that too much, but does fuss a little bit every once in awhile. She really likes to move.
The most fun we've had in the last week or so has been in holding the girls, which we do as often as possible, and in giving them baths. The girls don't really like bath time all that much, because it involves a lot of handling, which usually irritates them. However, they enjoy having their hair washed very much, because it means they get a kind of head massage. It's very cute to see their little eyebrows go up with their eyes closed in this expression of extreme bliss on their faces. Sometimes, if they are getting wiggly and starting to desaturate, you can gently rub their heads and cause them to relax, which brings their oxygen levels back up. It's really neat.
Aside from her own attempts, Tatiana has been extubated once, with poor results. However, the doctors will probably try to get her to try breathing on her own by the end of this week. She's doing very well, and the doctors think she might be able to handle being off of the breathing tube and switching to some other methods that allow her to breathe on her own.
In the meantime, Tatiana will have an MRI tomorrow, as part of a study we have consented to take part in. The study will help doctors learn how sonograms compare with MRI scans when determining problems in premature babies. The idea is to determine which method of scanning can more accurately diagnose the potential long-term problems that are common in premies.
Helen and I had originally been asked to take part in another study, which involved giving the girls doses of nitric oxide gas in the hopes of preventing the chronic lung disease that premies so often develop. But at the time, we were not sure how the girls were doing and were very nervous about exposing them to experimental chemicals. The gas is considered mostly harmless, but we didn't want to take any risks after having gone through so much. In the end, we are still able to provide some help to the doctors doing research here, and we're very glad for that. We just couldn't put our daughters at any more risk.
That's about it on the twins side. Dad Fortner made the long trek back to Texas this weekend. He said something about needing to check on the cats. ;) Seriously, though, I think he has earned a well-deserved break. We've been really fortunate to have his help and will be welcoming him back sometime after the twins come home(they should be home around mid-June). We'll take the opportunity to get our own routine going with the twins, first, but we'll be extremely grateful for the additional help.
I guess I'd better call it a night. I've got to get up and hit the books again tomorrow. I hope everyone is doing well. I don't think I've said thanks to those of you who have sent cards, lately, so "Thanks!" We enjoy hearing from everyone.
Take care and God bless!
Thanks (to those who have) for checking in on me. I've had to drop into hiding for awhile, because I've beeen very busy, lately. As you have probably noticed, when I write these updates, they tend to be very long, and I just haven't had time to write one, lately. Here's a quickie, though:
A few weeks ago, Tatiana went through a bout with a condition called NEC (necrotizing enterocolitis). I don't have time to explain all the particulars, but the basic gist is that she had a condition common in very premature babies in which the intestines suffer from severe damage due to their immaturity. If untreated, the condition can be fatal and we were very worried for several days. Fortunately, the medical staff caught the condition very early and treated it properly. Tatiana has been recovering nicely from the NEC episode. She was extubated (taken off the respirator) on Tuesday and went for about 36 hours on the nasal cannula before she got too tired and they had to put her on the CPAP, which provides her help with breathing without having to place a tube into her airway. She's doing well on the CPAP, especially since we made sure they gave her a mask, instead of the nasal prong variety that had bothered Natasha's nose so much when she tried it about a week ago. Tatiana started back on feedings two nights ago and seems to be tolerating them fine. She had a little bit of a residual after a morning feed today, but all the x-rays came back normal, so things are looking good, so far. She now weighs almost 3 pounds.
Natasha's doing well, too. Her feedings have been increased to 23 mL and are still being fortified with calories. She's not off the respirator, yet, because she's still very sensitive and tends to desaturate too easily. We're hoping she'll be off of it soon, but she's doing well, so there's no need to rush. Natasha probably weighs just a bit over 2 and a half pounds, now.
Helen's incision is finally healed up, too, and her six-week check-up has shown her to be in good health. She will be trying to take some light yoga classes for exercise while she maintains her busy schedule at the hospital with the girls. She's very tired, but in good spirits.
As for me, I'm just plain busy. The realities of making up all this school work are begin to weigh on me, but I'm making it through. I've decreased my San Francisco visits to every other weekend, which doesn't make me happy. Unfortunately, it's something I have to do, so that's the way it goes. Hopefully, things will be better when all my girls come home. It certainly won't be easier with twin babies, but it'll be better.
Well, that's about it. I'm off to my Thursday-evening class. I hope everyone is doing well. Take care.
As usual, not to be outdone by her sister, Natasha has once again extubated herself. I didn't fully explain in the last update that Natasha had extubated herself a while back and was doing so well that the doctors decided to put her on the CPAP, which forces air up the nose to assist with breathing. This is different from the respirator, in that the CPAP only provides assistance and doesn't actually force a baby to breath.
Unfortunately, the doctors originally chose to put Natasha on the "nasal prong" variety of CPAP. This version has a tube that goes up into each nostril. The problem is that even the smallest prongs they had were too big for Natasha's nose. The result was irritation and eventual tearing of the skin around her little nostrils. By the time they wised up and found a CPAP mask, her nose was so irritated that the CPAP just wouldn't work.
We were furious that the doctors didn't try the mask to start with, and made certain that the next time either of them was extubated, they would be placed on the mask right away.
Now, both girls are on the CPAP masks and are doing quite nicely. They will continue to have brief periods of apnea, because their nervous systems will occasionally forget to tell them to breath, but the nurses are always there to make sure that the apnea doesn't last too long. They are on caffeine therapy, meaning they get small doses of caffeine which somehow reduces the frequency and length of the apnea.
Well, I've gotta go. Take care, all!